Friday, March 27, 2015

Key Features of Possibly the Most Underserved and Underdiagnosed Disease

 
 This is not tired because you've had a long day. It's fatigue like you have the flu or like you are on chemotherapy. ...  In all, about 60 different symptoms can occur with the disease....

Tuesday, March 17, 2015

Crowdfund of biomarkers research only $6000 from goal

Let's all come up with a dollar or two and get this research started!


(re-posted as some of the links at the end didn't come out properly)

(serg1942 from Phoenix Rising asked me to post this)

(Read the entire project here:

http://bit.ly/1EmUZmf  i.e.
https://drive.google.com/file/d/0B3CcKvRcY8pZNW9NQ054OXNpSXc/view)

In 2013 IrsiCaixa (1), an internationally recognized AIDS research
institute, published a study in which they found alterations in
subsets of both T and NK cells in ME/CFS patients (2). Specifically,
they identified eight molecules associated with poor immune-system
function, that could be used for diagnosis (3, 4).

They expanded this preliminary study with a project called 'Comparison
of biomarkers in ME/CFS', for which a crowdfund of 29,000 € ($31,000)
was launched and achieved last year (5).

The preliminary results obtained from this second comparative study
(of 193 participants and 20 healthy controls) showed specific
immunological abnormalities in ME/CFS patients, and identified two
subgroups of patients, according to different combinations of NKCD57
and NK NKP46 cells. These subsets could be explained by reactivation
of herpes viruses, according to the authors (6, p.4). They also found
other interesting abnormalities worth studying further (3).

NEXT STEP: To get this published! HOW? The research team wants to (a)
double-blind the study, (b) increase the sample size (one healthy
control per two patients), (c) use the more accurate Canadian
Consensus Criteria for diagnosis and (d) add new markers to be
measured in the study, such as the percentage of perforin in NK and
CD8 T cells, and a much more in-depth study of the B-lymphocyte
family, among other things.

HOW MUCH DO THEY NEED? Just 12,000 € ($13,000 or £8,700) for
immunological analysis, and only 6,000 € ($6,500 or £4,300) remains to
be raised.

WHO HAS MADE THIS PROJECT POSSIBLE? The patients, who else! It was
both the study patients (who paid for their own tests to make possible
the project 'Comparison of biomarkers in ME/CFS'), and ASSSEM (a
national Spanish non-profit NGO, composed mainly of health
professionals and dedicated to ME/CFS, FM and MCS). ASSSEM promoted
the previous project and is promoting this one — they are the ones who
got IrsiCaixa interested in us and involved in this promising project
in the first place!

HELP TO SPREAD THE WORD!!!!
Share this crowdfund on your social network, post it on other online
ME/CFS platforms, post about it on your blog, etc.!

DONATE!
As of 17 March, 1€ = $1.06 = £0.72. So, for example, $5 = €4.60; $10 =
€9.20; $50 = €46.10; $100 = €92.20.

To give via PayPal or credit card, go to the ASSEM website:
http://www.asssem.org/

and click the yellow 'Donar' button on the right, which appears about
half way down the page.

To give via wire transfer:

IBAN: ES0901828732100201553888
SWIFT/BIC: BBVAESMMXXX
Bank: BBVA;
Beneficiary: ASSSEM,
Concept: "Objetivo 12.000"

The campaign deadline is 27 March, 2015

More information onhttp://www.asssem.org/

PERSONAL MESSAGE: As some of you know, I am a Spanish ME/CFS patient,
the administrator and owner of Spain's national ME/CFS research forum
(7), and am also a third-year medical student. I have no relationship
with ASSSEM or IrsiCaixa, other than as an individual supporter as a
patient. I do believe WE ALL, the ME/CFS community, deserve that the
data this team has found sees the light. We got the attention of
IrsiCaixa — the most internationally known and recognized research
team on AIDS — and they performed a preliminary study that yielded
very useful results that could provide biomarkers. Their findings
might also open the field to further exploration of the immune
aberrations in ME/CFS, and perhaps lead to new therapies.

If these preliminary results are confirmed in the new study, we will
have a published large-scale, double-blind, cross-sectional study,
most likely in an important international journal.

And we are only $6,000 away at this moment from making this real! So...

HELP in anyway you can!

Best wishes to you all!
Sergio


LINKS
(1) IrsiCaixa publication list and website in
Englishhttp://www.irsicaixa.es/en/llista_publicacions

(2) IrsiCaixa's 2013 ME/CFS study: 'Screening NK-, B- and T-cell
phenotype and function in patients suffering from Chronic Fatigue
Syndrome'http://www.translational-medicine.com/content/11/1/68

(3) IrsiCaixa News: '8 molecules are identified that could improve the
diagnosis of Chronic Fatigue Syndrome'
http://bit.ly/1bdzv4b  i.e.
http://www.irsicaixa.es/en/8-molecules-are-identified-could-improve-diagnosis-chronic-fatigue-syndrome

(4) Phoenix Rising article, April 2013: 'Spanish HIV Experts Give Aid
to ME/CFS' http://phoenixrising.me/archives/16499

(5) Discussion thread of 2014 crowdfund for 'Comparison of biomarkers in ME/CFS'
http://bit.ly/1AASCuG  i.e.
http://forums.phoenixrising.me/index.php?threads/irsicaixas-new-study-researching-new-tools-for-diagnosing-cfs-help-with-the-fundraising-campaign.29069/

(6) Details of study in English:
http://bit.ly/1EmUZmf  i.e.
https://drive.google.com/file/d/0B3CcKvRcY8pZNW9NQ054OXNpSXc/view

(7) ME/CFS Investigation research forumhttp://www.sfc-em-investigacion.com/

Sunday, March 15, 2015

ME and the Soap Opera Actress

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Send an EMAIL for FREE membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~
   >>>>>
Help ME Circle <<<<
   >>>>
15 March 2015
<<<<
Editorship : j.van.roijen@chello.nl
                                
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~


A doc. version - included a photo of the
SEID patient *Morgan Fairchilds* -  is
attached for private members, but can
also be found here:
http://bit.ly/1balgwY

Please  send tweets and (if you are a
severe patient hopefully pictures of
yourself...)

Her Twitter handle is @morgfair
 
~jvr


http://on.fb.me/1G7aFwj

By Michael Evison

I don't know if everyone knows that the main
protagonists in the IOM report were the old
CAA & Pandora.

CAA are now called Solve ME/CFS.

They are now going all out to convert the ME
community to SEID.

They have just recruited a woman called
Morgan Fairchild, who I have never heard of,
but she is some sort of soap opera actress.

Apparently she has Fibro.

It's rumoured that SEID may include Fibro.

This actress is as flakey as all the other
celebrities that claim they had ME.

But it appears that the CAA have recruited
her to attend a meeting on Capitol Hill to
speak up for SEID.

The problem is that SEID has shown
absolutely NO recognition of Severe ME and
this actress is unlikely to even know about
the suffering of PW Severe ME.

(CAA were the charity who used a post about
going on holiday with ME on Severe ME week)

There is A growing movement by PWME to
bombard Morgan Fairchilds Twitter campaign
with pictures of suffering Severe ME patients
so that she can't say that she doesn't know
about it.

I'm wondering if you can support this
campaign in favour of recognition for Severe
ME patients before it is accepted by the HHS
and encourage PWME to at least tweet their
pictures and comments to the actress.

There are concerns of what a flakey Fibro
actress will actually saw to Govt especially
when being fed propaganda by the CAA.

PLEASE SHARE THIS POST

http://bit.ly/1AqvQ8U


~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:
PEM, NOT Chronic Fatigue, is why patients
 are bedridden, homebound, unemployed,
        and unable to walk a block.
     ~:~:~:~:~:~:~:~:~:~:~:~:~

Monday, March 9, 2015

Your Syndrome's Missing Benefit | David Katz, M.D.

 

Doctors don't much care for conditions we don't understand well, can't treat effectively, and can't even confirm with a blood test. The frustration that results often translates into one of medicine's more common, and most regrettable missteps: blaming the victim. Patients with syndromes are often overtly, or at least covertly, blamed for their symptoms and engender an "it's all in his/her head" attitude in their doctor.

That the often truly impressive prowess of modern medicine is ill adapted to the misfortunes of the merely syndromic is not the truly grave problem here. The problem is the cynicism reflected in those comments on Medscape. The problem is failure to recall that the patient is the one with the disease

Saturday, March 7, 2015

One of Simmaron's 2 spinal fluid studies was published yesterday

One of Simmaron's 2 spinal fluid studies was published yesterday, showing a significant decrease in the cytokine IL-10 in spinal fluid of ME/CFS patients versus healthy controls. IL-10 moderates inflammation and autoimmune responses. The study was led by Dr. Sonya Marshall-Gradisnik of Griffith University in Australia and Dr. Daniel Peterson in Nevada. Please support Simmaron so we can keep the science coming!

http://www.hindawi.com/journals/mi/2015/929720/

The Reality of Chronic Fatigue Syndrome - NYTimes.com

Friday, March 6, 2015

SEID on Dr. Oz

Granted, Oz's audience is mostly female, but he's giving the wrong impression by repeatedly stressing that this is a disease that affects "millions of women" -- not "men and women".  Oz spent a scant 10 minutes on the topic, when we know it warrants a full hour (and then some).
 
Dr. Jennifer Caudell, who I'd not heard of before this week, got the name wrong, calling it Systemic Exertion Intolerance Disorder, when we've finally gotten IOM to upgrade us to a disease, but did stress "it's real, it is not fake, it is not made up."
 
Now we have criteria for diagnosing it.  (Actually, we've had diagnostic criteria for decades.....)  There are 5 questions to ask, and if you say Yes to 4 of them, you have SEID:
-- profound unexplained fatigue for 6 months
-- simple things exhaust you, like climbing one flight of stairs
-- unrefreshing sleep
-- brain fog
-- standing makes you worse
 
Rose, a patient, "nobody believed me", they thought she was crazy, and eventually she also thought she was just crazy, the doctors only wanted to give her anti-anxiety meds.  "Now I feel validated."
 
Researcher Dr. Ian Lipkin noted they've been at it since 1997, and most patients are not diagnosed for several years.  They're looking for biomarkers, unequivocal proof of ME/CFS/SEID (he used all three names), insight into why people are sick, and have come up with the idea of infections triggering something in the immune system.  Cytokines make you feel ill.  His group is looking in the blood, the mouth, the lower gastrointestinal tract for viruses.
 
Oz said what we've known all along, "women are often ignored".
 
Caudell explained that stress and anxiety comes with the condition (a result, not a cause, of being so sick and not believed).  She treats her patients with pacing -- a Not To Do List -- telling them to slow down and only select the three top things to do each day, not worry about the rest.  The best you can do is to manage the symptoms.
 
No, this was not even close to the best show Oz could have done on the subject.  Still, it could have been worse.
 
We should thank him for discussing SEID, while simultaneously telling him what could have been done better.

Thursday, March 5, 2015

Hidden Disability logo

 
 
 
The best I can do for everyone is to provide the file be email, if you write to hiddendisability@rogers.com. You will have to find a way to get the cards printed, either locally near you or online. Or, you can print at hone if you have the right equipment.
 
 
Me here: I would love to have this as a pin or even a T-shirt, if someone wants to set it up via Cafe Press or something similar.